New Insights into Diagnosis, Treatment, and Disability in People Living with Guillain-Barre Syndrome

Most people with Guillain-Barré syndrome (GBS) have difficulty using stairs, completing chores, and participating in leisure activities with family and friends, according to a new patient registry report published by GBS|CIDP Foundation International (Conshohocken, PA). The results of a survey of people with GBS illustrate the short- and long-term impacts of the disorder in terms of physical, emotional, and social outcomes, in addition to its substantial financial burden.

The GBS Patient Registry Report was published based on data from the GBS|CIDP Foundation International Patient Registry, which collects questionnaires from patients diagnosed with GBS, chronic inflammatory demyelinating disease (CIDP), multifocal motor neuropathy (MMN), and other conditions, with the goal of better informing health care providers (HCPs) about patient experiences. Key survey results for patients diagnosed with GBS include the following:

Diagnosis and Treatment

• 85% of participants were diagnosed within 3 weeks of symptom onset, with neurologists making 78% of GBS diagnoses.
• 51% of participants used intravenous immunoglobulin (IVIg) to treat their GBS.
• 65% of participants received treatment at an intensive care unit (ICU), 2 in 3 needed rehabilitation, and 1 in 3 needed ventilation.
• Approximately 1 in 5 participants were readmitted to the hospital, with 56% staying for ≥2 months.

Recovery and Long-Term Impacts

• 88% of participants reported difficulty completing tasks due to fatigue.
• 74% reported that pain interferes with their day-to-day activities, and 72% reported that pain interferes with their enjoyment of life.
• 74% of participants reported difficulty in using stairs, 60% reported difficulty walking for ≥15 minutes, and 38% reported difficulty driving.
• 82% reported difficulty participating in leisure activities with friends or family.
• 59%, 55%, and 49% of participants reported feeling helpless, hopeless, and worthless because of GBS, respectively.
• 48% of participants were diagnosed with depression and 30% with anxiety after their experience with GBS.
• 45% of individuals with GBS needed a medical device after treatment including wheelchairs, canes, walkers, or ankle braces.

Financial Impacts

• 40% of people with GBS reported a change in their employment, including a loss of employment for 61% of those who reported a change.
• 43% of participants had annual out-of-pocket (OOP) costs of $1000 to $5000, and nearly 1 in 5 individuals reported costs over $5000. 
• OOP costs for people with GBS can include higher premiums, home care services, and adaptive and home modifications.